The Health Service Executive report on cystic fibrosis care is a model for how proper treatment can finally be achieved in Ireland, writes ORLA TINSLEY
YESTERDAY’S REPORT from the Health Service Executive (HSE) working group on cystic fibrosis echoes the recommendation of the report by Dr Ronnie Pollock, an independent report fielded and paid for by the Cystic Fibrosis Association in 2005.
It is relieving to see the HSE report finally published, but it’s also a little disheartening that it has taken since its completion in 2006 for this to happen.
Pollock confirmed the grim outlook for all patients with cystic fibrosis (CF) in this country, their families and medical care workers. There were huge deficiencies in services for the 1,143 people in Ireland with CF, no neonatal screening programme for cystic fibrosis, and devastating conditions of non-segregation and lack of resources, particularly in adult care.
As CF progresses it becomes more multifaceted with respiratory issues, pancreatic insufficiency, cystic fibrosis related diabetes, liver disease, osteoporosis and arthritis among other things causing problems. The 2005 report said staffing was inadequate and there were poor physical resources. Cross-infection between someone with CF and other patients and that between two CF patients was of great concern given how infections are easily transmissible.
Pollock concluded that Ireland displays a much higher number of deaths than the UK and that there was a severe lack of funding. The CF association said that it “made for disturbing, and at times uncomfortable, reading” but that his recommendations were “cause for optimism”.
The HSE formed a working group to compile their own audit in April 2005. It was completed in 2006 and released yesterday. The HSE allocated €4.78 million in 2006 for improvement of staffing and a further €2 million was allocated in 2007.
In May 2005 I moved from paediatric to adult services. I have experienced over the past four years all of the issues Dr Pollock outlined, as have most other CF patients. I’ve been in rooms where other patients were vomiting or had MRSA or were cursing or screaming throughout the night.
I’ve woken up to find confused old ladies in the bed beside me after they went to the bathroom and came back to the wrong curtain. I’ve sat through hours attached to a drip in an AE department coughing up blood wondering what the person behind the curtain beside me has and going through the lists of wards with experienced CF nurses on them wondering if I’ll get a bed in one.
I’ve cleaned other peoples’ hair out of drains before I showered, used alcoholic wipes my mother brought in for me to clean some one else’s pooh or a badly aimed wee off a toilet bowl before I could use it. I’ve slept in corridors instead of my bed because of noise that would drive the sanest person cuckoo.
I’ve nagged about getting a bed on a proper ward and been frustrated when staff who have never heard of CF bring me the wrong tablet or intravenous IV or tell me I should try some cough bottle.
You could fill a year’s worth of this newspaper with the life experiences of all people with CF in Ireland, not to mention their caregivers and families. CF as an illness is a different experience for everyone, but the frustration at the lack of facilities and the very real danger it presents is a universal one.
The report is on the right track, that’s what this is all about. We held our breath for three years (no pun intended) and survival rates got better. Some 52 per cent of people with CF in Ireland are adults and 48 per cent are children. There are 1,174 people living in Ireland with CF as of September 2009. The report says “optimum care for people with CF is based upon multidisciplinary care which maintains an appropriate level of care for patients at the most convenient location”.
This means recognising the need for CF care nationwide so that when someone down the country needs to be rushed to hospital in the middle of a massive lung bleed or any of the other number of things that can happen, they are not faced with anything less than international standard of care treatment.
The need for “access to the specialist elements required for optimum outcomes” is important because we need a multidisciplinary team of consultants, nurses, dieticians, physiotherapists, social workers and psychologists to deal with the multiple aspects of our illness. For all of these people to work to their maximum ability, we all need facilities. The report also stipulates “access to care in an appropriate environment eg facilities which enable infection control measures (whether in the person’s own home in ambulatory care or in-patient settings)” Currently, as an adult CF patient attending the national referral centre at St Vincent’s, there are eight single en-suite rooms which opened in August 2008.
The report agrees with Pollock on the need to establish regional CF centres, it says some centres provided patient figures that were different from those by Pollock and needed re-examination. It recognises that cover arrangements for specialist staff are internal because of the specialised nature of CF care and that in some cases that “larger units where an individual physiotherapist, dietician or CF nurse specialist provides specialist team input are particularly vulnerable to gaps in services” and sometimes funded sessions are used.
It also recognised that psychology and social work input into multidisciplinary teams is limited. We need to know that the current recruitment freeze will not affect caregivers and that their positions will be ringfenced.
The recommendation that “a tertiary clinical service linked with a national transplant programme should be formally designated for both adult and paediatric services” is vital. We need a national transplant authority to oversee the donation of organs in Ireland.
Less than two weeks ago the second CF patient since 2007 was transplanted in the Mater hospital, but this number needs to increase to the acceptable European number of 20 a year. We need the resources, it’s not good enough. While the press release for the HSE stated: “In the Republic of Ireland, predictive models of CF survival estimate that more than half of people with CF born since 1980 will live past 30 years,” the report itself stated that “in smaller countries such as Ireland where the absolute number of deaths caused by cystic fibrosis each year is low, often in single figures, annual estimates of median age at death are unstable”.
Thirty people died from CF in 2007. The report says that “the need for infrastructural development is evident in many CF centres” and “development of adequate single room, en-suite accommodation is a priority”. People with CF know we have to fight to get basic facilities afforded to those in countries like the UK, Spain and the US.
CF services should be delivered in the community to people who are well enough, but now, unlike in 2006, American centres are advocating more for inpatient treatment because in single en-suite rooms, on properly resourced wards, with a multidisciplinary team who can work in proper facilities, we live longer. The imminent newborn screening programme is vital and survival rates are increasing. The report is an important way to move forward now that all the cards are laid out but real action to implement all aspects of the plan is needed now.
Orla Tinsley is an aspirant journalist and CF sufferer